Wednesday, March 31, 2010

What a month! The month of March was very important to me because it marked ten years since diabetes had moved its unwanted self into our lives. I faced it with mixed emotions. My heart broke for the innocence that was lost but we celebrated good health and the amazing friendships that we had found because of diabetes. I made a conscious choice to begin to focus on the positives. Diabetes was here to stay so no sense crying over spilled milk. It was time to rejoice over the wonderful people that had been brought into our lives.

We had made friends with families from all over the world. We had connected and that was the best part of life with diabetes. The worst part also reared its head in March. For every parent who has a child living with diabetes, their worst fear is to have their child lose their life to this disease. A parent is never to outlive their child and in the past month it has happened to far too many parents. I am not sure why this has happened. Is it a product of technology that we are learning more about these deaths? Is it a product of the fact that we have become such a close knit community? No matter what the reason, we had heard of four death of children under the age of 21 who had either succumbed to a low at night or who ran into trouble with highs and slipped away from their families. There is no greater loss. There are no words.

These deaths cut me to the core. I was heartbroken to know that children, in some cases very close to my own child's age, and in two cases diagnosed at the same time as my child, had their lives cut short. I began to wonder about my own focus. I have always worked very hard to make life better for those living with diabetes now. As much as I would love a cure, I have never been able to see it happening in my lifetime. I felt it was better for me to focus on keeping those who have the disease healthy and in the best shape that I could. I felt that if a cure was found that they would then be able to move forward with only memories of life with diabetes and not carry forward the complications. These deaths made me wonder if my focus was wrong. Could it be that a cure was the most important thing of all? Could it be that I should be focusing on fundraising and getting people to really dig deep to help with this? I was truly at a loss. I did not know which way was right...until Monday.

This past Monday changed it all. It put me back on track and made all of the doubts disappear. You may remember if you follow www.diabetesadvocacy.com, that pre-budget consultations were recently held regarding the impending Newfoundland and Labrador Spring Budget. I encouraged people to send letters and to ask the Minister of Finance to see fit to expand the existing insulin pump program to include all adults with Type 1 diabetes. It was too painful to have to deal with young adults who had received a pump as a child but who could not afford to use it once they turned 18. It was killing me to have to tell my son that his career choice would have to be based on income and health benefits.

My son and I had had a conversation about career choices on that very Monday. He looked at the garbage truck going by and jokingly told me that he was going to be a garbageman when he was finished school. I told him that he couldn't. He would not be able to afford his insulin and supplies. I quickly gave him a total of over $1000 a month in diabetes supplies and said that the pay of our local garbageman just would not cover it for him. He then asked what if his brother decided to be a garbageman? I said that as upset as I would be because I obviously am hoping that my boys do a little more with their education, that he could be a garbageman if that made him happy. I further explained that his brother did not have the same high health costs to cover and he could live on that salary.

Monday evening I received an email. The Newfoundland and Labrador government had announced in their spring budget that they would be expanding the existing Insulin Pump Program to include young adults aged 18-25. I could not believe it! We had left our pre-budget consultation planning to come back and continue this fight next year. We were sure that our message had not been received. I had not heard back from a lot of people and thought that the message was not being spread. We vowed to do a much better job for the 2011 budget. This would be a learning experience but we would not give up.

Well we still will not give up but we have once again overcome one more obstacle. We are one step closer to coverage for all people with diabetes in the province. My month was made. Our work had paid off. People did stand up with us. We did make a difference! I have not been able to fund a cure for my son, but I have been able to improve the financial security of many Canadians living with diabetes through changes in the Disability Tax Credit. I have further made a huge difference in the life of my son and many, many other young people living with diabetes in Newfoundland and Labrador by working with others to see coverage for insulin pumps. I know my focus and am so proud that it has paid off so well. Thank you once again to everyone who helped us to see this happen!

Friday, March 26, 2010

Those sayings used to make me cringe. I would feel the hair on the back of my neck stand up. My blood pressure would quickly escalate...until today.Today I read something that changed that. It gave me a new perspective and brought tears to my eyes.

I read a letter written by a mother of a child with Type 1 diabetes. The child was 13 years old. He was diagnosed in March of 2000 at the age of three. He was active in advocacy. He was an inspiration to many other young people living with Type 1 diabetes. Notice the use of the past tense? He passed away recently. Diabetes killed him. His mother reflected on how lucky some of us are to be able to say that we "have" a child with diabetes. She noted that "I'd rather have a boy with diabetes, than no diabetes at all."

Michelle Page-Alswager remains one of the bravest women that I have never met. She challenges us to walk in her shoes for just 30 seconds. I don't know that many of us could. I remember March of 2000. I remember holding a lifeless child in my arms and willing him to live. I remember bargaining with God for the second time, asking Him to save this child. I could handle anything but he had to live. I remember praying beside his bed. Praying that he would live to see another day. Praying that my baby would be given back to me. My prayers were answered. My son has lived for 10 years with Type 1 diabetes and I hope another 80+ after that!

For the Alswager family, and sadly many others, diabetes was not just a big deal it was a deadly deal. Life must have seemed very bad and very cruel. Things could not have appeared any worse. For my family? Things could be worse. I have diabetes to hate and my son to love. I have diabetes to fear and my son has life to live.

Diabetes is not a big deal? Well we know differently. Diabetes is not that bad? Death is certainly a lot worse.It could be worse? Yes, we could have lost our battle 10 years ago but instead we stand here ready to fight another day. I will continue to work to teach my son to live his life to the fullest. To care for himself to the best of his ability. To try to accept and move forward. To love each day and be grateful for all of the wonderful blessings it brings.

According to Facebook, it is "Hug a person with diabetes day". Personally I think an extra hug every day to show them how much we love them, care for them and enjoy having them alive and healthy is definitely in order!

Wednesday, March 17, 2010

I held his tiny, lifeless body in my arms willing him to live. Each breath was a miracle and I prayed that it was not his last. Words like ketoacidosis and diabetes swirled through my head but I pushed them to the back. The only thing I could concentrate on at the moment was getting my baby to the Emergency Room of the hospital 150km away. He had to make it and then they would make him all better. If I willed enough of my own life energy into him he would be okay. He had to be. This was my baby, my child. I would not lose him. He would be fine. He had to be.

The memories remain so vivid. It feels like yesterday and yet it feels like a lifetime ago. Its been ten years today. Ten years of learning. Ten years of struggling. Ten years of winning. I have to remind myself of that--we are winning!

Ten years ago, snow raged and a blizzard threatened. Today it is sunny and flowers are daring to bloom. Ten years ago my child could only be weighed on a baby scale but now he is over 100 pounds and quickly reaching my height.

Ten years ago, I could only see the next 12 hours. That was how long my child was expected to live. Now I can see a lifetime filled with adventures and learning. Back then the word “diabetes” meant nothing to me. Today it means everything. It is a part of our day. It wakes me at night. It gives me a purpose. It has brought me wonderful friends. It has not taken over my life or my son’s, it has become a part of it.

March 17, 2000 I was terrified for all that I stood to lose. March 17, 2010 I remain in awe of all that we have gained. I still hate this disease. I hate the demands on my son and myself just to keep him alive and healthy. I hate living in fear of complications. I am very grateful however for the incredible advances we have seen. I continue to be amazed by the amazing people that this disease has brought into our lives. Our friends and family have grown beyond my imagination and those bonds are the very best thing about this disease.

I will always hate stabbing, probing, and worrying about my child. I will hate the silent attacks it makes on my baby’s young body. I will hate the many battles we fight to get our loved ones the best care in school and in life. I will hate watching a low blood glucose level interrupt someone’s life. I will hate knowing the loss of friends who couldn’t fight this disease any longer.

I will more importantly cherish the blessings that we have seen—faster meters using less blood, smaller needles, better insulin pumps, smaller continuous glucose monitoring systems, and so much more. The one thing I cherish most of all is the amazing friendships along the way. Those who have helped us change the world, those who have stood beside us when we cried, those who have laughed and understood the strange looks when you ask your 3 year old if they are high when you are in public.

Here is to celebrating 10 years of health and 10 years of blessings! Thank you all!!

Monday, March 15, 2010

Last night I was flipping through channels, killing a bit of time before I took my weary body to bed. I watched a show about a trans-gender case, got bored, moved on. I came across the "Celebrity Apprentice". I have never seen the regular "Apprentice", let alone the celebrity version but I noticed that Brett Michaels was on. I had read that he was going to be on the show and he would be donating his winnings to a diabetes charity. I don't really follow the guy very much. I did enjoy listening to Poison back in the day when I had no clue about diabetes or the fact that the lead singer of the band lived with this disease. I decided to check it out and see what the show was all about.

It turned out that the show was divided into women versus men. They each had to run a restaurant for a set number of hours and raise as much money for charity as they could. The team that raised the most won all of the money. The show progressed and then they showed a preview of what was coming. Brett Michaels was going to go low on tv! Now how cool is that?? Not just talk about it but diabetes was going to be real and on tv that night! I called for my youngest son to come and watch the show with me. I told him "Hurry up, Brett Michaels is going to go low on tv! How cool is that???" He thought it was pretty cool and even knew who Brett Michaels was.

While we were waiting, I had my son test. He hadn't been doing much but it was soon going to be time for bed and I wanted to have a clue as to where he was sitting blood sugar wise. It appears that waiting for Brett to go low had a greater impact in our house than I realized. When my son tested he was low as well! Crap but at least he was still up when it happened. He grabbed himself some juice and we sat back waiting for the "low" scene to appear...and we waited. It turns out that they were showing you what would happen in about another half hour or more on the show! In the meantime, my son retested. He was now LOWER than when he drank his juice! What the??????? Okay, this time Mom is going to get the glucose source. "Do you want juice or tablets?" "Juice would be could" was the reply. Alright then, a big glass of juice it is. We would get this low out of the basement one way or another.

We continued to watch the show. Brett finally goes low. He is given a coke with a nice amount of ice and stands off to the side to drink it. My oldest is watching him saying "He is low! What the heck is taking him so long to drink that? Would you finish that buddy? You are low!" Okay, that child is well trained! It appeared that Brett recovered from his low much faster than my son. Three glasses of juice later the child is finally in range. We sit back and watch Brett Michaels' reaction as he is told that his team has won and he will get to give $100,000 to his diabetes charity. Awesome!

He is visibly moved. As he walks out of the boardroom, he continues to say that he has lost so many of his friends to this disease. So many of the people that he grew up with have died because of this disease. My heart breaks. Here is this man who is out there (and from what I understand some of his reality tv stuff really puts him "out there"), in the public eye and so tormented over this disease that drives us insane each day. Fame and celebrity may allow him to win a great amount of money for charity but it does not protect him from experiencing the lows of this disease. Congratulations Brett! I may even have to try to stay awake to watch again next week.

Tuesday, March 9, 2010

The other day I was on Facebook, no that is not the "wow" factor". Anyways, I was on Facebook and noticed that someone had posted a request to know if people were planning a special green meal for St. Patrick's Day on the 17th. Again, no big deal normally about people celebrating St. Patty's Day. Its not a day that I celebrate but it is a date that sticks in my head.

The 17th of March is a day that I think about every day. Its a day that I obsess about each year. Its the day that my world changed completely. Its a day that I found my focus and entered a world that I knew nothing about. Its the day that changed the life of my entire family forever.

So you get the idea that I am a little obsessed by this day. This year the day was especially important because it will be 10 years since diabetes came into our lives. Ten years ago on that date I did not know if my child would live or die. Ten years ago on that date I would spend a lot of my time praying and willing my son to live. After March 17th, ten years ago, I would began a journey to learn everything I could about Type 1 diabetes.

Imagine then how shocked I was when I realized with that post, that I had NOT thought about that date. I was not waiting for it to happen. I was not planning my memoirs for that day or any other event to mark it. I was instead focused on a date later in the month. I was obsessed with my other son turning 16. How could that be happening?? I am way too young to have a 16 year old child! How did that little baby grow up so quickly? How could my little boy be old enough to drive in March of 2010? I was obsessed with having a child old enough to be legally allowed to drive. How would I handle my "child" driving my vehicle? I am too young to have a child driving. I must have been like 12 when he was born!

I was actually very happy to realize that the theme that I had created for the month of March, I was beginning to live. I had decided that the first 10 years with diabetes were about survival, learning to cope and staying healthy. The next 10 years and then some would be spent celebrating. My son is alive. He is healthy and diabetes is part of our lives. It is a huge part of mine as I help others with the disease. It is just an annoying but necessary part of his. It is no longer the sole focus of our lives however. There were other bigger milestones that eclipsed diabetes and that truly was a huge and wonderful WOW! in my life.

Saturday, March 6, 2010

This topic often comes up when speaking with parents of children with diabetes. The child becomes non-compliant (don't you just love that word?) and the endo threatens to take the child's insulin pump away from them. I really do not understand the reasoning.

If you child is not bolusing, testing, etc--basically not doing their daily diabetes care by pressing buttons, what makes the professionals think that drawing up a syringe will make them that much more accountable? I think I would feel better if my child had a pump because then I would know that the basal rate is at least being delivered. If they are on shots they may miss injecting the basal dose the same as they are missing the bolus amount.

Maybe they think that if they are injecting that Mom or Dad will be watching the injection and make the child more accountable? What is the difference between Mom or Dad watching/doing an injection versus them bolusing or supervising a bolus on a pump? I am honestly stumped by this.

In defense of the endos however, I have heard of parents who felt that, in some cases, this can be the way to go. It has been suggested that the psychological implication of being attached to something like an insulin pump 24/7 can become difficult for preteens or teens. The constant reminder of their illness becomes too much for them. We know that they just want to be "normal" kids and not stand out in any way. They are often too young to realize that normal is just a setting on the dryer. They have yet to realize the importance of being an individual.

Another reason for "taking away" the pump has been to restrict freedom. In all honesty, I do not exactly understand this reasoning. The idea is that without the pump the child will have to go back to routine meals and eating habits. I find two problems with this. First is that kids will be kids and if they are sneaking food or not bolusing, the lack of a pump and having to inject for food will not change this. If they didn't bolus they will most likely not inject. If they were sneaking and not telling what they ate, why would the lack of a pump make that behaviour change? The second problem I have with this is that most people using injections will now be put on a long lasting insulin like Lantus or Levemir. They do not require the strict eating schedules of NPH and regular insulin. They allow a child to pick and choose eating times. Yes, they could be put on an NPH regimen but why would you do that when research shows the basal/bolus regimen to be better for your child?

The biggest thing I have taken out of this debate is the fact that an endo should NOT be the one to say your child is not complying and should be taken off the pump. It should be a decision made by the family in consultation with their diabetes team. The child may in fact need a "pump holiday". They may be overwhelmed and need a different method of delivery to help them cope. It should not however be a punishment with the pump being the reward. Good health is the reward and it should be obtained in the best way for the person living with diabetes...and of course the sanity of the parents.

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Disclaimer...in case you didn't already know...

None of the writing, opinions, or information contained in this blog should be taken as any kind of suggestion for your own diabetes care. I am not a doctor, dietician or trained diabetes educator (although I play one in real life) and have no formal medical training. If you have questions or concerns about individual health matters or the management of your diabetes, please consult your doctor, specialist nurse or diabetes care team.